THE CENTRE FOR ATTENTION, LEARNING AND MEMORY
SALIVA SAMPLE INFORMATION SHEET
(for parents of children under 16 years)
As part of your visit to the CALM centre your child is being invited to give a saliva
sample, so that we can extract some DNA. This is in addition to the questionnaires and
assessments, and before you decide it is important for you to understand why the
sample is being taken and what it will involve. Please take time to read the following
information carefully and discuss it with others if you wish. Ask us if there is anything
that is not clear or if you would like more information. Take time to decide whether you
wish your child to take part in this part of the research.
What is the purpose of this study?
We know relatively little about why some children have particular strengths and
difficulties when it comes to learning. One possibility is that some aspects of our DNA
might be important. The DNA is inside each our cells, and different bits of DNA code for
different things, such as eye colour or height. We want to know whether any or our
DNA is important for how we learn. In particular we are going to look at genes that we
know play a role in brain development and brain processes. But it is only once we have
seen very many children (in the order of hundreds) that we will be able to draw any
conclusions, and these will not be about particular individuals.
Why have we been invited to take part?
All children who are referred to the CALM centre are invited to give a saliva sample. You
and your child may withdraw from the study at any time without explaining why.
Confidentiality - What happens to the samples that I give?
The samples will be stored on our behalf at the Metabolic Research Laboratories at
Addenbrooke’s Hospital, because they have proper facilities for storing saliva samples.
The staff there are subject to the same confidentiality controls as the CALM research
team. The samples will be kept in a ‘linked anonymised’ form. This means that the
samples will only be identified by a code, and only the CALM research team will know
which code corresponds to which child. The samples will be used to extract DNA for use
in this particular project and cannot be accessed or used by people outside of the
research team for any other purposes.
The MRC, who funds the centre, complies with the requirements of the Data Protection
Act 1998 with regard to the collection, storage, processing and disclosure of personal
information and is committed to upholding the Acts core Data Protection Principles. All
enquiries concerning access to data held by the Cognition and Brain Sciences Unit (in
which the CALM centre is based) should be addressed to the Freedom of Information
Liaison Officer at the Unit in the first instance.
What are the possible advantages and disadvantages of taking part?
There are no risks to giving a saliva sample. There will be no direct benefits from being
involved in this part of the research, since this information will not be sent to your
referrer and is not informative at an individual level. This part of the CALM project is
aimed at understanding that causes of the different skillsets that children have, and in
this sense your participation will be making an important contribution.
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What happens if the sample shows something unusual? Will our GP be
informed?
The analysis that we conduct on the saliva sample is not in any way diagnostic.
Furthermore the sample will only be used for this study. We cannot determine whether
you have anything unusual in your DNA, nor can we tell anything about your parents.
What will happen to the study results?
They will be kept securely for a minimum of 10 years and possibly indefinitely in the
MRC Cognition and Brain Sciences Unit data archive in accordance with good research
practice.
What if there is a problem?
If you have a concern about any aspect of this study, you should first ask to speak to
the Chair of the CALM Management Committee, Professor Susan Gathercole (contact
details below). In the very unlikely event of anything untoward happening during your
visit, the MRC covers all volunteers against negligent harm.
Who is organising this research and who has it been funded by?
The research is funded by the UK Medical Research Council. All research that recruits
NHS patients is looked at by an independent group of people called a Research Ethics
Committee. This study has been reviewed and given a favourable opinion by the East of
England, Cambridge East Research Ethics Committee.
Contact details of the research team:
The following researchers are based at the CALM research Unit:
Dr Duncan Astle – Duncan.astle@mrc-cbu.cam.ac.uk
Professor Susan Gathercole (Chair of CALM Management Committee) –
susan.gathercole@mrc-cbu.cam.ac.uk
Dr Joni Holmes – joni.holmes@mrc-cbu.cam.ac.uk
Dr Tom Manly – tom.manly@mrc-cbu.cam.ac.uk
If you would like to speak over the telephone with any of the researchers then please
telephone reception (01223 355294) and ask for the team member that you would like to
speak to.
Centre for Attention Learning and Memory,
MRC Cognition and Brain Sciences Unit,
15 Chaucer Road,
********
The following researchers are based at the Department of Experimental Psychology,
University of Cambridge:
Dr Denes Szucs – ds377@cam.ac.uk
The following researchers are based at NHS Child and Adolescent Mental Health
Service: Dr Ayla Humphrey - Ayla.Humphrey@cpft.nhs.uk
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